Our precious Princess Grimmy lost her battle with MPS-VI on New Year’s Eve, December 31, 2015. We’ve struggled daily trying to figure out a new normal, one that doesn’t revolve around caring for her. Eradicating this disease has become our fight, our mission and our resolve. This past weekend was the National Specialty Show for the Miniature Pinscher Club of America. With the tremendous help and heart of our friend, Marcia Tucker, we were able to address the club members. This is the letter she read to them:

An Open Letter to the Breeders of the MPCA from an MPS-VI Mom

March 8th, 2016

Dear MPCA Breeders;

I bought my first Miniature Pinscher in 1992. He charmed my life for nearly 18 years. The love I had for him urged me to help others, I began rescuing the breed in 1993. They came from all parts of Florida, shelters and owners. One year alone, 52 Miniature Pinschers came through my private rescue group. This was before the Internet and Social Media! During my 23 year history, I’ve had the pleasure of knowing hundreds of Minpins. Somehow, though, I had never heard of Mucopolysaccharidosis Type VI (MPS-VI). That is, until an exceptional Minpin came into my life a little over 2 years ago.

Grimmy was fortunate to wind up at Seminole County Animal Services where they recognized she was unique and needed special care. Though I’ve officially been out of rescue for years, they called me. I will forever be grateful they did. Upon getting this teeny girl home, it was your own Marcia Tucker who said I should look into MPS-VI. She’d recently seen a presentation on the disease and knew Grimmy exhibited all the signs. Radiographs were taken and sent out to several Veterinarians. All said there was no way the dog was alive.

Puppies born afflicted with this disease rarely survive past the age of 2 and those who do survive that long have a range of medical issues. In order to be born with MPS-VI both parents must be carriers of the MPS gene. Newborn puppies may not show any sign of the disease right away but as the cells become damaged from not being able to get rid of the old mucopolysaccharides, symptoms start to appear. This is why it is crucial to test all potential breeding dogs for the MPS gene.

(The body is continually replacing old cells with new, and to do that, parts of the cells must be broken down and disposed of so that the new parts can be built properly. When a dog has MPS-VI, it has a deficiency of arylsulfatase B, an enzyme that breaks up the mucopolysaccharides so the body can remove them from the cells. The mucopolysaccharides that should have been removed stay in the cells and cause damage over time, as they don’t allow the proper formation of new cells.)

Grimmy’s trachea was displaced with calcified rings surrounding it. Her sternum was a pile of sticks tossed about haphazardly. Her spine was permanently dipped down at the neck. She was unable to raise her head above her shoulders. Her paws resembled flippers and were arched to the inside. She had absolutely no muscles, whatsoever, in her backside. Legge-calve Perthes was suspected but we never took hip/leg radiographs. She could slowly frog walk on her own but rested frequently. Grimmy’s bottom jaw was jutted forward giving her a blunt muzzle. Her nose constantly blew bubbles. Her tongue was oversized and she had thick saliva. It was impossible to age her. Thanks to MPS-VI her corneas were pools of lipid deposits, rendering her blind. Her teeth resembled candy corns. Her breathing was always labored. Ultrasound showed her heart was unexpectedly normal.

A simple DNA test was done through VetNostic Laboratories to confirm if she was affected by MPS-VI. She was. Why did we not euthanize a dog in this condition? I’m sure my husband and I considered it briefly. Despite the obvious struggles, Grimmy’s bright spirit and determination were undeniable. We brought her home knowing it was a Hospice situation but Grimmy had other plans. She was happy, funny, playful, smart, fabulous and loving. Her mangled body could not contain the distinctive charisma we know as being a Minpin! She held her own amongst 3 Australian Cattledogs. She was fearless. She was a miracle. Once I began researching MPS-VI, I quickly learned there is scarcely any information out there. There is certainly none explaining how to graciously LIVE with an MPS-VI dog. For 774 days my life revolved around caring for this dog. Sounds daunting but it wasn’t. Even after seeing a Veterinary Specialist who had only seen one other MPS-VI dog in 30 years, all I could do was feed her, adore her and keep her safe. She showed me how things needed to be done. Every day was an adventure. Every day there were challenges and problems to solve. We figured things out as we went. Every single day was a blessing.

We documented Grimmy’s life and death on Facebook. Though this disease is rare (textbooks only mention it and the MPCA website has only one link referring to it on the Health Information page) I quickly found 12 other MPS-VI dogs on Social Media. How many more are out there? Interestingly, there appears to be a high concentration of them in Southern California. The similarities among the dogs are astonishing. Not only do they all look alike, their personalities are also similar. All have incredibly strong wills to live as normally as possible, in spite of their illness. Their ages varied, the oldest was miraculously 9. A few were purchased as normal looking puppies. All the others were found at shelters. In the 2 years since we became an “MPS-VI family”, 7 of the 13 have died.

Grimmy died exactly as I knew she would. There were countless times she would wake in a panic, unable to breathe. I slept with her cradled in my arm so was always able to calm her down and pat away the saliva choking her. This particular day, 774 days after she claimed my heart, nothing unusual was happening. We were having a great day. Grimmy was doing what she loved doing more than anything, chewing on a chewy stick. One second she was walking, carrying the chewy stick to a different part of the bed. The next second, she was gone. As soon as I grabbed her, I knew. I tried in vain to bring her back but she was gone. As if a candle, that brightest of lights known as Princess Grimmy, was blown out. Poof! Gone. That’s how they’ve all died.

Thanks to Facebook and Instagram, our MPS-VI dogs have not only become a force of Inspiration, they’re also Educating thousands of people. Because of Walter, Tucker, Vader, Charles, Elvis, Horus, Mort, Pan, Scooby, Polly, Tigger, Vinnie and Grimmy, people know the faces of MPS-VI. They saw our dogs live wonderful and full lives despite the fact their own bodies were turning against them. They wept with us as the fatal disease took them. Our MPS-VI dogs are the reason Minpin owners are now getting their dogs tested. And, yes, tests have come back positive for MPS-VI. The answer is ridiculously simple. To eradicate this disease from our beloved breed all you have to do is TEST them prior to breeding!

We have formed a non-profit organization called The MPS Army Foundation. We would love for the MPCA to join us in this fight. –Since the MPCA objective is to encourage and promote quality in the responsible breeding of pure-bred miniature pinschers and to do all possible to bring their natural qualities to perfection – wiping out this devastating disease is certainly a significant part of achieving that. Potential puppy buyers are now asking breeders if they test for MPS-VI. If the answer is no, we urge them to walk away. The 774 days I spent with my MPS-VI dog will always be cherished but no dog need suffer from this disease. I would spare anyone the paralyzing pain of losing one to it.

The Mission of the MPS Army Foundation is to eradicate MPS-VI in dogs through Awareness, Education and DNA Testing, as well as, provide Support for those dogs affected by MPS-VI. We envision a world where MPS-VI is a thing of the past in dogs and, until such a time, all dogs affected by MPS-VI are given the support necessary to have the best life possible.

The MPS Army Foundation will do the following:

To assist with medical bills for the dogs found to have MPS-VI.

To provide funding for breeders to have their dogs tested for MPS-VI.

To send an MPS ARMY Certification for tested dogs that have been found to be clear of the MPS-VI gene.

To provide an “out” for people whose dogs have been found to have MPS-VI, who can no longer provide care for that dog.

To provide an adoption list for people wanting to adopt and care for an MPS-VI dog.

To raise funds for medical research for dogs with MPS-VI.

To provide educational materials to breeders and parents of dogs with MPS-VI.

To provide post mortem assistance to families of dogs with MPS-VI.

On the MPCA Health Information page you list your current concerns as “patellar luxation, cervical disc, legg-calve perthes, epilepsy, thyroid, heart defects and eye problems in varying degrees of severity. ” A Miniature Pinscher affected by MPS-VI has ALL these medical problems and more. If one scrolls down the page to where Legg-Calve-Perthes Disease is discussed there’s a link to PennGen for MPS-VI testing but no explanation or discussion, whatsoever. The fact the specific gene which causes this devastating disease has been discovered and a simple DNA swab test can be done is beyond miraculous.

The AKC has a Breeder of Merit Program certifying that applicable health screens are performed on your breeding stock as recommended by the Parent Club. We at the MPS Army Foundation strongly urge the MPCA to consider adding MPS-VI testing to your breeder recommendations. Together we can fight MPS-VI!

“It takes an Army to win a battle,” and our battle is against MPS-VI in dogs.